The family of a brave nine-year-old boy battling an extremely rare condition has been left heartbroken after revealing his condition has deteriorated.
Milo Browne, from North Shields, suffers from a rare degenerative condition so unique it is known only as M3BHA and there is no diagnosis.
Children with this condition are not expected to live to two years but Milo, who was born blind, has defied all the odds leaving doctors baffled.
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It has only ever affected around 10 other people in the world and it's thought Milo is the oldest known child with the condition.
The condition causes Milo to suffer from seizures and respiratory problems and he is unable to talk or eat, sit or stand without being fully supported meaning he needs 24-hour care.
Sadly, Milo's health took a "rapid decline" in December 2021, and he now suffers from between 100 to 150 seizures a day and his respiratory issues have gotten worse.
But despite his poor health, the little fighter has left his mum and dad Stephen Browne and Laura Davidson proud as punch with his inspirational spirit.
Stephen said: "Milo has deteriorated over the last year but since December he has rapidly started to decline. He's having continuous seizures.
"It's hard because of how complex Milo's needs are. If he needed an organ he could have mine, he could take every part of my body.
"There's no treatment for Milo so we're just trying to sustain his life and give him the best quality of life.
"Everyone Milo meets just loves him, even now in the hospital he still smiles and you just think how is that possible?
"He defies the odds constantly and he gives us strength. He's a cheeky chappy and that's why all the staff here love him, that's why we love him.
"He leaves a lasting memory on everyone he meets. He has touched so many people."
Tragically, the parents know Milo will eventually lose his battle with the condition but said he continues to amaze them by how he "never gives up".
Stephen continued: "We've had this battle all his life and it's not a battle we can win.
"We can continue educating people and raising awareness but it's if he's able to continue to fight.
"We've had the conversation many times probably 100 plus times about Milo not coming home and that it could be his last few weeks or days and Milo has proved them wrong every time.
"It's horrible and it does upset us because we just feel so helpless but he's never given in and that gives us strength."
His parents also believe Milo is making a difference for other people by showing it doesn't matter if someone has written you off.
Stephen said: "When someone is complaining about the weather or has had a bad day at work and at that moment they think about Milo, it gives people that inspiration to keep going.
"He has been written off so many times but he's proved people wrong and just because someone has written you off doesn't mean you don't have worth.
"Milo can't talk, he can't communicate but he's still making a difference for other people."
While there is no cure for the condition, the parents hope by sharing Milo's strength and determination with the world they can help inspire others.
They also hope to finally fulfill their dream of buying an adapted caravan fit for families with children who may have complex needs like Milo.
Despite Milo needing 24-hour care, the family has been raising money by selling handmade crafts made by Stephen, Laura and Milo's 10-year-old brother Felix at Tynemouth Market every Sunday.
Stephen explained: "At the market, I get to spread Milo's story and to me, that's doing something really positive with my time.
"Not a lot of families like us can go abroad or far away because they need to be in close proximity to a hospital or it's often too difficult to be able to go somewhere.
"We both had bucket lists and things we wanted to do and we've started crossing things off the list because they're not possible and it's getting shorter and shorter.
"We just wanted to create a place where families can go where they have everything they need.
"We probably know now that the caravan is not something that Milo will be able to witness we were hoping it was going to be something our family could experience.
"But other families can benefit from it thanks to Milo's legacy.
"We're just two parents trying to do what we think is right."
If you would like to donate to the family's cause, you can do so here. You can also follow Milo's journey here.
